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Pain (Read 3688 times)

Sarah4

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Pain
05/31/11 at 09:41:14

Many years ago I was in a car accident and sustained a spinal injury (compression fracture L2). For decades I have thought that the severe low back pain I have is all due to this injury. However, over the past few years as my other odd symptoms became more pronounced (which I now know are POTS and most likely MCAD), the pain has both worsened and changed. I now have severe pain in my hips, upper legs and knees. I have noticed that others with mast cell disorders report having pain, and I now wonder how much of my pain is due to the accident and how much may be due to MCAD. Do people with mast cell disorders who have not had injuries have disabling lower body pain? I use percocet or Tramacet, but on really bad days these aren't enough. Are there MCAD meds that help with pain? I seem to have a worse time with this upper leg pain around midcycle and at the beginning of my period - does anyone else have this?

I had noticed that this particular symptom had decresed a bit over the past year when my POTS was really bad (maybe because I could barely move), but now it's back with a vengeance. Any advice would be appreciated as always.

Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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mikev

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I Love YaBB 2!
Posts: 188
st louis, mo

Re: Pain
Reply #1 - 05/31/11 at 09:58:52

Sarah:
My wife who has lower leg pain due to weight issues could not get darvacet anymore as now allowed down in US anymore. He put her on Ultracet. It's a combo of Ultram & actaminopren. She's not sure it's as good but doesn't have a lot of choices. I'm not so sure either as I have tried Tramadol with a couple tylenol & I didn't see much difference, but it's inexpensive I know that.
Mike V

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Starflower

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Not a medical doctor
Posts: 715
Indiana

Re: Pain
Reply #2 - 05/31/11 at 13:27:13

Hi Sarah,

I used to have moderate pain in my knees, hips, shoulders, elbows, and the small bones of my feet and hands. That's pretty normal with a systemic autoimmune disorder. It often kept me from falling asleep easily. The only position where I could really sleep comfortably was flat on my back... sleeping on my side made my joints ache terribly! Tylenol was still helpful, though, which is why I say the pain was only "moderate." Fortunately, once I started taking medications for my mast cell disorder (especially Gastrocrom) the pain gradually went away.

I still get a little pain occasionally... like last summer I went "camping" with my kids in my parents' backyard and my knees got really achy in the middle of the night (because of the cold)... but nothing like it used to be! The hip pain was especially bad during my period.

Heather

We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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nelson1600

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Master of None :)
Posts: 92
Melissa, TX

Re: Pain
Reply #3 - 06/02/11 at 03:11:32

Sarah,

10 years ago I was also in an auto accident where I suffered a compression fracture of the t10 and l1... Actually I refused medical treatment at the scene and within 10 days found myself in a doctor's office.

Recently, compliments of Dr. Akin I was provided with a SM diagnosis and suffer from many of the common symptoms; flushing, darriers, nausea, stomach cramps, diarrhea, etc... But the only time my back gets me is due to one of two things. The first is the most painful but more temporary; I have little fragments of bone spur that push into the muscles in my back if I twist or turn the wrong way too quickly or with force (I have to be cautious when I am doing any physical work). The second is general back pain and discomfort; but the pain I get in my back is always associated with being more active. As an example; I have a small pond in my back yard full of gold fish and about every two months I spend 3-4 hours on my knees / legs cleaning and servicing the pump, fountain, etc. I know ahead of time that this is going to make my back give me grief for a day or two so I am mentally prepared for it. But I have not found any increases in back pain or issues that I feel are associated to the SM. But remember we are all different and I know that I don't react to nearly as much as many others; you know your body better than anyone else; I just wanted to give you a run down since we both suffer from compression fractures of the spine.

~Lucas

Quick Update: Not to mention you suffer from MCAD and I have to apologize because I am still learning and I do not know the differences between MCAD and SM; and I wonder if this could be playing a role.

Doctor's are glorified auto mechanics of the human body; make sure you find one that you trust...

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Riverwn

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Posts: 993
Gainesville, Florida

Re: Pain
Reply #4 - 06/02/11 at 07:55:32

Hi Sarah!
There are so many things that can affect the pain we feel with our mast cells misbehaving--like womens monthlies, or hormone activity of any kind, weather patterns where an approaching front drops the barometric pressure, old injuries, growing older, and not having our meds tweaked well enough is a definite problem that affects our pain.

I am post menopausal but I know my pain would be worse if I still had to deal with my crazy hormones. As it is, I have pain much like you. It starts at my lower back, goes to both hips, down to both knees and down to the ankle area. I cant stand for more than 2 minutes or walk for more than 2 minutes or I get "rubber legs" and feel like I might collapse. I have a walker with a seat on it so I can rest anytime I need to.

I take Vicodan for pain 3 or 4 times a day and I take Tramadol in between doses of Vicodan--so I dont get used to it too easily and it will work better when I need it to. Im also diabetic so I have neuropathy on the bottom of both feet.

I also keep cold packs in the fridge for especially painful days (my knees and hips) and sometimes use a "bed buddy" (hot pack) when it feels like warmth would help more (usually my lower back).

I also want to give you one tip that helps me quite a bit--when my pain level gets really bad, take an extra antihistamine with the pain pill--it works so much better! I think of it as hitting at the mast cells that are causing my pain while I am hitting at the pain too.

Hope this helps!
Hugs
Ramona

~~~Count Your Blessings!~~~

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Sarah4 Tutor Offline Posts: 34	Re: Pain Reply #5 - 06/08/11 at 14:25:38 Again, thank you everyone for all the info and advice. I will try the suggestions and let you know if anything helps. I asked Dr. Afrin about the pain, and he said many of his patients report this kind of pain and it improves as their MCAS is properly treated - hope to find out this is true!
Back to top	Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain IP Logged

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